Ally’s Page

This page is dedicated to our Ally girl…

Ally and her Nemo fishy (Lucky Ears and Lucky Fins)

In September of 2009, Ally and her beautiful little Microtia ear came into our lives. Of course, at first we did not understand why Ally was born with a little ear. In fact, we had no idea Ally also had what is called Atresia until she was 2.5 months old. After worrying about Ally, blaming myself, and doing our research for almost a year, we quickly began to see what a happy baby Ally is. Each day we continue to see her cute, adorable personality develop. Ally is the happiest little girl we know. Even when Ally has a cold or does not feel well, she still finds a way to show us her pretty little smile. She has the sweetest little giggle too. Yes, there are days where I still worry about Ally, but I am her mommy and that’s what mommies are supposed to do. I love my daughter’s little ear and I think her ear is adorable. However, I am concerned about Ally’s hearing and I would like for her to get the most out of life. Whether Ally is in therapy or having her hearing evaluated or trying out BAHAs, I will always let Ally try what I believe are the best options for her. I do not consider Ally to be challenged or a special needs child, but I do know she needs a little extra help here and there and I would like to make sure she gets the help she needs. We invite everyone to join us on our journey with Ally. We invite you to watch Ally grow up and to see how Ally benefits from the options we have chosen for her so far. Deep down I know Ally will be just fine in life, but if I can find a way to help her keep her sunglasses on just so she she can see how bright her future is, I will help Ally find the best options so she can get the most out of life.

Ally is a perfectly healthy little girl, except for the hearing loss in her right ear. Although Ally has normal hearing in her left ear, she has a moderate to severe hearing loss at a 65/70dB level in her right ear. Ever since Ally has been wearing a BAHA, she is more responsive in her environment. Although she may not wear her BAHA every single moment of the day, I believe Ally has already benefited from wearing the BAHA. Prior to wearing the BAHA, Ally was not very responsive. Ally is still experiencing some delay in her speech, but I can not help but wonder how much more of a speech delay Ally would have if she wasn’t wearing the BAHA. On days where Ally gets frustrated with the BAHA, I do not force her to wear it because I know that there are other days when she does want to wear her BAHA. Below are some images of Ally wearing the sound processors (BAHAs) that she has tried on which have helped her to hear better:

The day Ally got her first loaner BAHA…she smiled and lifted her head (Cochlear Intenso)

Now, I know some may not believe in therapy or that their child is delayed, but I know Ally struggled with some things that I knew therapy could help her out with. For example, Ally was born with “low tone.” In fact, Ally still has some difficulty climbing the stairs on her own and she often stumbles around the house. I am told as she gets older, her balance will improve and her core muscles will get stronger. Ally finally started walking at 17 months of age! Also, right around 17 months of age, Ally finally stopped spitting up. Some may say she was just a spit up baby and that when she was done spitting up, she would stop. However, by having Ally in therapy I learned that she also had low tone in her mouth muscles. Ally wasn’t always chewing her food either. So, when we had the chance to rule out any esophageal and abdominal issues through a “swallow study,” I jumped at the chance to make sure Ally was alright. Either way, if the swallow study was not needed and Ally would eventually out grow the spitting up in time, I needed that peace of mind that she was alright. Since Ally was not talking much and still till this day does not speak much by putting two words together, I was determined to help her out a bit. Since I never got around to signing with Ally’s big sister, Hailey, I figured now would be the time to do so with Ally, especially with her unilateral hearing loss. I know some may believe that signing may cause a delay in speech, but when your child is not really communicating to begin with why not try to help her out by signing. Ally took a liking to the signing and I do believe it helped her out very much. I always signed while speaking to Ally so she would receive the benefit of both and not just one over the other. Below are some images of Ally with her therapists whom I believe helped her thrive and be the active little girl she is today:

Judy, Ally’s occupational therapist

Judy, Ally’s occupational therapist

Betsy, Ally’s physical therapist

Linda, Ally’s speech therapist

Linda, Ally’s speech therapist

I am raising Ally the same way I am raising her big sister, Hailey…to be accepting and loving of one another. Hailey doesn’t talk about Ally’s little ear except once in a while and it is mainly when Hailey says she would like an ear like Ally’s little ear. I don’t believe Ally is any different from any other child. I have done my best to help Ally feel comfortable with her little ear by kissing both of her ears equally (even though I could kiss her little ear a million times everyday. I have a couple of stuffed animals for Ally who also happen to have right ear Microtia/Atresia thanks to some minor adjustments. As faith has it, we happened to find another Microtia/Atresia family just down the road from us with a daughter Ally’s age who also happens to be named Ally too. In our support group, I call them “Meet the Ally’s.” We have play dates form time to time and we attend the girl’s birthday parties. I am happy knowing that both Ally’s have each other and I hope they continue to grow up together and maybe they can even be there for each other if they have a bad day here and there or maybe through surgery if that is what we all decide. Below are some images of Ally and her friend Ally and of Ally with her Microtia/Atresia stuffed animal friends:

My Ally girl (Alyssa) and her friend Ally (Alessandra), both RMA, three months apart and wearing their Ponto Pros

I stitched Ellie’s ear back and Bear was sent to us by Bobbi and Jamie of the Build an Ear Foundation

Ally and Ellie…both with RMA

Ally is an everyday little girl who loves and adores her big sister, Hailey. Some days they play great together and some days they don’t play as nice with each other, but they are sisters and I know they love each other very much. Below are some images of Ally with her big sister Hailey:

Hailey walking her little sis, Ally, to the pre school she used to go to

Hailey and Ally for Easter

Ally and Hailey striking a pose

Princess sisters

Hailey and Ally at swimming lessons

Although I would like for Ally to have two ears so they could hold up her sunglasses, I find it very difficult to want to part with her beautiful little ear. I even have a picture of Ally where she pulled her bib up over her head and it looks like she has no ears. I know she already is beautiful with 1 and a quarter ears…I wonder if she will look just as beautiful when she has two ears some day. Below are some images of my Ally girl wearing sun glasses today:

Ally girl wearing her sun glasses

Ally’s sun glasses stay on much better when she is leaning back, either way she still looks stylish

Ally girl the closest to missing both ears and she is even more beautiful

On Wednesday, August 22, 2012, Ally had her first ever IEP (Individualized Educational Plan) meeting for preschool. Since Ally was now three years old, it was time for her to transition from her IFSP (Individual Family Service Plan) through early intervention services to an IEP. I came to the meeting prepared and thankfully, Ally qualified for an IEP. Ally’s IEP included placing her in an amazing deaf and hard of hearing program that was offered at an elementary school within our school district. I wanted to make sure that Ally’s speech improved even though she was having trouble communicating. So, it was very important to me that Ally be given the opportunity to be in a classroom setting that offered both verbal communication and sign. The services that Ally qualified for also included physical therapy services and the option for wearing an FM system along with her BAHA during school time. Since then, Ally has completed her first year of preschool and is progressing amazingly well. Over the past nine months, Ally is speaking much better and has a much larger vocabulary. I am so thankful for the teachers, therapists, and hearing specialists that have helped Ally. Most of all, I am extremely thankful for Ally’s IEP because she needed the extra help. Even though Ally is still delayed in her speech and communication (as of 5/2013), she continues to show improvement and is thriving in her school classroom setting.

Below are some pictures of Ally as she continues to grow (from 3 to 4 years of age):

Ally on her first day of preschool (3 years of age)

Ally and her American Girl Doll wearing matching BAHAs

Ally and her American Girl Dolly with matching soft band head band BAHAs!

Ally’s 3rd Birthday Party with some of her Microtia friends and her big sis Hailey

Ally and her very first field day at school . This was the 18th Annual Deaf and Hard of Hearing Track and Field Day in Denver, CO!

Ally and her very first field day at school . This was the 18th Annual Deaf and Hard of Hearing Track and Field Day in Denver, CO!

Ally and her very first field day at school . This was the 18th Annual Deaf and Hard of Hearing Track and Field Day in Denver, CO!

Ally in her very first performance at school!

Ally on vacation in Mexico and ready for the beach!

Ally looking pretty!

Ally wearing her BAHA at school

So, as we continue to do our research and as we continue to explore options for Ally that we believe she will benefit from, please stay in touch as we continue on Ally’s journey with her little ear. We hope that you find our website helpful and we hope it allows you to be able to connect with other families and individuals with little ears. This is why I started both our support group on Facebook and Ear Community…so, none of us would be alone.

The Tumblin Family

Comments

Your little Ally is so cute and is just the same age as my little Annaliesa.
my twins were born Aug. 2009. the Drs did a CT of Anna when she was just a few days old
to check on the inner ear workings and as far as we know everything inside works she
showed a little speech delay in comparison to her brother but my problem at the moment is that although I feel she should have some speech therapy the pre-school she goes to feels that she speaks fine for a 3yr old. so it’s just going to be a lot of visits to the school to hopefully get more help.
thank you for forming this page.

Hi Rita,
You are very welcome. Try not to worry so much, but still continue to advocate for your little Annaliesa. Every state is different and every school district is also different and it also depends on the budget. Do request an IEP meeting if you haven’t had one already for Annaliesa. If you are told that Annaliesa does not qualify for an IEP at this meeting, request to have another IEP meeting and try again. You can invite medical professionals to attend your IEP meeting on Annaliesa’s behalf, such as her audiologist, a speech therapist if she had one, the early intervention coordinator, etc… If no medical professionals are available to be with you in your meeting, you can contact the Hands & Voices Organization and request that a guide by your side mentor go with you to the meeting for support so you don’t feel alone. Also, request written letters from Annaliesa’s audiologist explaining her hearing loss and the school would want to see her latest audiogram showing what her dB level of hearing loss is. Under our Hearing Loss menu tab section of our website, I have lots of helpful articles that discuss unilateral hearing loss and the concerns behind a child that has one such as children struggling in the classroom and being shy and not speaking up for help when they need it. I also have sound simulations of what it is like to hear with a hearing loss at various different levels in this same section of the website that can help support your concern for Annaleisa. If Annaleisa is doing fine right now, that is wonderful news, but see if she can have more eye contact when her teachers speak to her or if she can be seated in front of the classroom (some teachers will be willing to do this and some unfortunately will not). As she gets older, say in the 1st grade, try again for an IEP for her. If again, she does not qualify for an IEP, try getting her a 504 Plan instead (this information can be found on our website under the Helpful Resources menu tab. I was able to find a deaf and hard of hearing preschool class for my Ally, but Ally is speech and communication delayed by 1.5 years and this was recognized by her school teachers and the educational audiologist for her school. Ally also wears an FM system. Rita, I know you are a wonderful advocate for your Annaleisa, but I encourage you to try, try again and see if you are able to get her qualified for an IEP in the upcoming years in school. You may need to find a public school for her that offers a little extra help for the deaf and hard of hearing. Your school district should be able to help you find out which schools these are. Hang in there, things are never easy…just keep looking out for her. See if your audiologist believes Annaleisa may benefit from an FM system and if so and if she qualifies for an IEP, most public schools will provide an FM system to help her hear better. Good luck and keep your chin up. Just see how Annaleisa does in the months/years to come until she can begin to advocate for herself. – Melissa, Founder of Ear Community

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Microtia Picnic Photos

2011
1st Annual Denver, Colorado Picnic (USA)
DENVER, COLORADO
JUNE 11, 2011
For three months I planned for our summer picnic. I drove around to at least thirteen grocery stores with Ally (when I found the time to do so) and

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